Amanda’s Story

I was 23 when my life changed forever.

I know this isn’t a groundbreaking statement – lots of people graduate, get a new job, get married, or do other life-changing things at 23.

I got cancer.

I had graduated from the University of Hartford and stayed on campus to get a Doctor of Physical Therapy degree. I played Division I basketball at Hartford and was excited to go into a career related to sports. My plans were interrupted though, when a chronic health issue I’d quietly managed on my own got out of control.

For seven or eight years, I had been dealing with an embarrassing problem – gastric distress and bleeding – on and off; sometimes mild, sometimes severe. I hardly talked to anyone about it, and when doctors played it down, tried to blame it on my diet, or told me to wait it out, I just accepted what they said. I had to miss a game now and then, but overall I learned to live with it. What I realize now is that I was living with a pit in my stomach every time I would see that blood, but not want to talk to anyone about it.

During my first year in the DPT program, I got pretty sick and felt like I had to push harder for a diagnosis of some sort – that pit was telling me that something bad had to be going on. It was really hard to advocate for myself. Little did I know it was the first of many times I would have to speak up more than I felt comfortable with or make a decision I didn’t feel ready to make.

I had a colonoscopy and was expecting to hear that I had Chron’s Disease or IBD.

Nope – colon cancer. WTF.

I had been prepared to give up gluten, but I was NOT ready for moving home, putting down tens of thousands of dollars for fertility preservation, surgery, chemo, radiation, losing tons of weight, botched surgery, more surgery, hysterectomy, ostomy bag.

I also wasn’t ready for the feelings I had when I started my PT clinicals. I would go straight from the infusion room to the PT clinic, from hearing deathly ill people talk about their hopes of healing to hearing perfectly healthy people complain about how much a sprained ankle was cramping their style. I may have been the youngest person in that room getting chemo, but I felt for all of those survivors beside me and realized I wanted to give back to people like them.

After I was through with that litany of treatments and learned to live with my ostomy, I enrolled in nursing school at Johns Hopkins and a year later started working on the adult inpatient leukemia unit. I was so happy to be in a place to support these people I shared a kinship with.

But when I left work every day, I was alone. Forget dating – there was no way I was getting close to intimate with anybody with my new “companion” always at my side. No social sports or working out to relieve stress either; I didn’t think intense physical activity was an option for me anymore.

Then a friend from high school who also lives in Baltimore told me about the Ulman Cancer Fund and its Body of Young Adult Advisors. I checked it out – somewhat hesitantly – but once I was halfway through my first BOYAA meeting I knew I had found my place. These people looked and acted like me, and they spoke my cancer language. For the first time, I had peers my own age who could actually understand what I had been through, and some had even been through similar experiences themselves.

Before I knew it, I had signed up for Point to Point, and was going to have to figure out how to RUN from Baltimore to Key West. Cancer is still the toughest thing I have overcome, but this experience ended up being a very close second! The first few days, it was so hard to get through ten miles, but with Ian, Brock, and a bunch of other new friends – no, family – by my side, I managed to tick them off one by one.

I also managed, for the first time, to truly TALK about my experience with cancer. My Point to Point teammates were willing to put their own problems and priorities aside and just listen to me. Each of them had their own story, and in sharing theirs, they helped me be able to share mine, knowing I wouldn’t be judged or questioned or stigmatized or forgotten.

My life was changed forever at 23 when I learned I had cancer. And it was changed again at 26 when I came to UCF.

I know you have made a donation to UCF at some point, so in some way, you are part of my story. Thank you for giving, so that this organization and these people were here when I needed them. I know it sounds cheesy, but you have made all the difference.

As you could probably tell from earlier in my story, I don’t like to ask people for help. But I’m going out of my comfort zone to ask you to contribute again this year to the Ulman Cancer Fund. I know, without a doubt, that your support – financial and moral – will help someone else like me regain their body and their confidence after cancer.

Cancer changes lives…so do you.

Sincerely,

Amanda Weaver

The Marquarts and the Woods – BE Committed

Jim and Keri

Be Committed. The meaning ascribed to these two words can vary a great deal from person to person. In times when health and circumstances are beyond one’s control – as is often the case for young adults experiencing cancer – we are inspired by those who take these words seriously. They look beyond themselves, they get comfortable with discomfort, and they just keep showing up.

At the Ulman Cancer Fund for Young Adults, we are honored and humbled to partner with these types of people every day. Sometimes we even get to interact with an entire community of truly committed people – this is the case in a small town, three hours away from UCF headquarters, in Northeastern Pennsylvania.

Each fall for the past four years, a small group of UCF staff has piled into the car and made the trek up Route 83, gone over the river and through the woods, and arrived at the “Back Mountain” of Luzerne County, PA – more specifically, at the home of Jim and Keri Wood for Screw Cancer Brew Hope PA.

It all started because of the Woods’ natural inclination as 

Marjorie and Brian

helpers. This bent prompted them, in 2013, to introduce long-time friend Olivia Marquart – a recent college graduate newly diagnosed with synovial sarcoma – and her family to Brian Satola, Chief Operating Officer at UCF, where Jim serves on the Board of Directors. The relationship, and ultimately, the community that developed as a result of this introduction, soon made the distance between the Back Mountain and Baltimore seem inconsequential.

The Woods have always been committed to having a good time, hosting a big end-of-summer party at their home each year. Upon Olivia’s diagnosis, they saw a need and felt compelled to leverage this event into something more meaningful. They partnered with Olivia’s mother, Marjorie, and sister and brother-in-law, Samantha and Jamie, and committed to turning the lighthearted party into Screw Cancer Brew Hope PA: an awareness-building opportunity and fundraiser for UCF.

 

Samantha on Key 2 Keys

Both the extent and impact of this commitment are impossible to quantify. For four years in a row, this small group and their extended families and friends have spent countless hours on event planning and execution – spreading the word across the neighboring towns, collecting donations for silent auction items, negotiating with vendors, setting up and tearing down decorations – all toward the goals of teaching their local community to be ambassadors of the knowledge that young adults are not immune from cancer, and giving that community a tangible way to support Olivia and family throughout her ups and downs with cancer.

Through their commitment to Screw Cancer Brew Hope, the Marquarts and Woods have come together to donate and raise more than $175,000 for the Ulman Cancer Fund. Their commitment to building relationships has decreased the alienation Olivia has felt, and created stronger connections throughout their community. It has enabled the Ulman

 

Cancer Fund to expand the programs through which we fulfill our mission of creating communities of support for young adults, and their families, facing cancer.

Marjorie, Olivia, and Keri

Both Olivia and Samantha have been able to extend their communities beyond the Back Mountain through UCF’s Key to Keys program. Each sister has participated in the experience, driving or bicycling to Key West with a group of strangers who, over eight days and 1,200 miles, become family. They have created cherished memories of riding into Key West and sharing dedications with their teams, which empower them when recalled on tough days. Through Key to Keys, they have each committed to supporting their newfound friends, and have received invaluable companionship and encouragement back in return.

Margaret Mead is often quoted as having said “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” At UCF, we are so grateful for this small group of committed people, and we have no doubt that they will change the world for countless young adults well into the future.

 

Donate to Be Day https://tinyurl.com/y8btb4mz

Cristal’s Story – BE Courageous

Meet Cristal! Born and raised in the suburbs of Chicago, Cristal is a spunky, resilient and big-hearted, daughter, sister, student and inspiration to many.

Cristal’s cancer story began during a college semester abroad in Spain. In the middle of her experience, she began to experience intense pain in her abdomen. She found a local doctor who told her that she needed to go home immediately. When she returned home, Cristal learned she had stage 3 Ewing Sarcoma – a rare and aggressive form of bone cancer. She was pulled away from her peer group, and put through an aggressive treatment that included 17 rounds of chemotherapy, 6 weeks of daily radiation, a major tumor debulking surgery and a lot of time spent in the hospital due to cancer treatment and surgical complications such as a bowel obstruction. It was a quick and scary switch from frolicking the streets of Salamanca, Spain to spending time in a hospital bed fighting for her life.

Throughout this entire process, Cristal never lost sight of her goal of graduating. With an incredible amount of resilience and determination, along with the support of her university, family and friends, she returned to school and graduated a year later, becoming the first in her family to earn a college degree!

Once she was given a clean bill of health, Cristal became determined to reclaim her body after her Cancer experience. She found out about UCF’s Cancer to 5K program – a free 12-week training program for cancer survivors.  Given the opportunity to meet and train with other survivors, Cristal flourished and showed the world that she not only kicked cancer’s butt, but could also run a 5K!

Upon crossing the finish line, Cristal met a member of the UCF staff who suggested she look into the 4K for Cancer program and bike across the country. She initially thought this was inconceivable, but by that June, Cristal had fundraised more than $4,500 for the Ulman Cancer Fund, was well-trained, and ready to start her journey.  With 18 strangers, she hit the road – on her bike – heading out across the United States to support other young adults with cancer.

Cristal’s 4K journey was not an easy one, but it was undoubtedly incredible. She struggled in the beginning, learning how to push her body in a manageable way and how to make friends with these strangers who didn’t know her story yet. Having been isolated from friends and classmates during the two years she was in treatment, Cristal had become apprehensive about interacting with people in her own age group. Her 4K team became a supportive community that allowed Cristal to, in her own words, “catch up” with her peers.

Cristal was tested by times of frustration and challenge, but when asked why she was biking across the country, she would always say the same thing; to show other young adults with cancer that something like this is possible. You can survive and you can take your life back.

Throughout those 70 days, Cristal grew in a multitude of ways. She became an incredibly strong rider. She learned that she had to be patient with her body, but that she could in fact do this. She became one of the fastest riders on the team. She even gained the nickname “Hill Doctor” due to her awesome ability to conquer steep hills at impressive speeds. Even more incredible, however, was how Cristal changed as a person. She began opening up about her story and her struggles in ways she hadn’t done before.

While riding on the long roads of Idaho or Nebraska she would tell her teammates about what she went through and the people she met in the hospital and support groups, who inspired her to fight back against cancer. Each day, she dedicated her ride to a long list of people, including those who had fought cancer, were still fighting, or who had lost their battle. She created lasting bonds with her team, who supported and leaned on each other every second of their journey. One day of the ride, each member of the team surprised Cristal by dedicating their day to her.

While on the 4K, Cristal celebrated one year of being cancer free – her “Cancer-versary” as she called it. It is a testament to her persistence and strength that she was conquering this journey less than a year out of treatment. Throughout the 70 days of the 4K for Cancer, Cristal laughed and cried, fixed flat tires, and danced her way up hills.  On August 12th, she rode across the Golden Gate Bridge next to 18 of her best friends, officially completing her 4,000 mile journey from coast to coast.

The programs of the Ulman Cancer Fund for Young Adults helped Cristal to reboot her life after cancer, changing her perspective and connecting her with a community of support that became her family.

Donate to Be Day https://tinyurl.com/y8btb4mz

Betsy’s Story – BE Human

For twenty years, volunteers have been critical to UCF’s ability to carry out our mission. Our committed volunteers do yardwork or prepare meals for patients we serve, run alongside cancer survivors completing their first 5K race, plan fundraising events – really, they do whatever it takes to ensure that we continue to move closer and closer to a world where no young adult faces cancer alone!

Betsy Serp has become a one-of-a-kind volunteer whose friends invited her to serve alongside them at the UCF Races several years ago. After seeing cancer survivors cross the finish line and achieve feats they didn’t think possible, Betsy was hooked! She now sacrifices her retirement leisure time and shares her top-notch project management skills to help us as a volunteer Program Coordinator for the UCF House.

Betsy is no stranger to the housing industry; she worked in the mortgage business for many years, and collaborates with her husband, Ed, on his weekend home improvement business.  So when Betsy told us that she had decided to take early retirement and would have some free time, we quickly asked her to contribute some of that time toward the UCF House!

In her volunteer role, Betsy spends the equivalent of 1-2 days per week making sure planning and construction progress smoothly. She manages communication between our general contractor, our interior designer (UCF Founder Diana Ulman), individuals and companies who have donated items for the house, and UCF full-time staff. Betsy’s work will ensure that we meet requirements set by the Maryland Historic Trust and that the project qualifies for LEED certification.

Betsy gives so generously of her time because she is inspired by the vision of young adults having a place to live alongside new friends who are going through something similar. She is confident that the UCF House will not only be a physical structure, but that it will be the framework around a strong support system for everybody who walks through its doors – patients, family, friends, and community members.

Betsy – from all of us at UCF, thank you for all you do!

Josh’s Story

Josh’s Story

Josh Minton thought he was invincible. A 27-year-old Army Captain in peak physical condition, Josh had already been through what he thought would be the biggest challenges of his life – four years at West Point and a tour of duty in Afghanistan as a Field Artillery Officer – and he survived both with aplomb. Engaged to be married, with a clear path forward in the Army, Josh planned confidently for his future.

While training at Fort Still in Oklahoma, Josh got checked out for what he thought must be a kidney stone. To his great surprise, he instead received a diagnosis of an incurable form of neuroendocrine cancer. He shipped off to Walter Reed National Military Medical Center, leaving behind his comrades and far from his roots in Ohio. He withdrew from the world and separated from his fiancée, in denial about his new reality.

Over the next six months of chemo and self-imposed isolation, Josh processed his situation and little by little began to shift his perspective. He learned about the young adult support group at Walter Reed, run by UCF Patient Navigator Meg Fitzgibbons, and decided to give it a try. He found the group to be dynamic and flexible, and enjoyed sharing awkward moments of hilarity as well as poignant and sad reflections with his new peers.

 

Josh now reflects that the emotional challenge he continues to face is harder than any physical or tactical task he has encountered. Getting support from people at UCF and Walter Reed who could truly empathize with him, Josh – ever stubborn – rallied and decided to give support to others. He has shepherded fellow officers and enlisted through their cancer experiences, developing relationships he knew would end in heartbreak, but having the courage to do it anyway. He has completed physical feats – a half marathon, a60-mile walk, and UCF’s Key to Keys – to keep perspective, focus on the positive, and honor those who have gone before him. He has taught high school students how to be there for their friends who have cancer or chronic illnesses, and addressed elected officials at a Cancer Moonshot summit.

His body may not be invincible, but his spirit surely is. Josh, we salute you!

Donate to Be Day https://tinyurl.com/y8btb4mz

MJ’s Story

MJ’s Story

Meet the newest member of UCF’s Body of Young Adult Advisors (BOYAA): Marissa Hayes, also known as MJ.  Through her BOYAA service, MJ is poised to be the epitome of one of our organizational pillars: giving and getting support. Coming to BOYAA as the recipient of its 2017 scholarship, she quickly came to appreciate the community BOYAA creates and signed on to help raise funds to award future scholarships, and to give hope to other young adult survivors by sharing her story.

The fourth of seven siblings, MJ has, by necessity, learned to fend for herself. When she experienced consistent shoulder pain that she couldn’t chalk up to wakeboarding or perfecting her round-off/back handspring/back tuck combo, she persisted in seeking an answer after being told by several practitioners that she just needed physical therapy. While finally meeting with an orthopaedic cancer specialist, she received the news – alone, at 18 – that she had Ewing sarcoma.

MJ moved from Oregon, where she was enrolled at Oregon State University, to San Francisco, to seek treatment. She endured a year of chemotherapy and radiation, with some harsh side effects. Choosing this path of treatment instead of surgery, however, enabled MJ to continue as a Formula 3 driver – ultimately ranking 8th out of 40 in her nation-wide class!

As is UCF tradition, MJ has turned her frustrations into action. Feeling out of place in the pediatric hospital, she got involved with its AYA youth advisory council and social group. Inspired by a few of her caregivers, MJ has set her sights on becoming an acute care pediatric nurse practitioner – a position that will enable her to work specifically with the AYA population. Bolstered by the UCF scholarship, MJ is now enrolled in an 18-month program at theJohns Hopkins School of Nursing. Strengthened by the support she is currently getting from UCF, there’s no telling how much support she will ultimately give to others.

Iron Girl Columbia Triathlon to Host First Disabled Woman Triathlete

On Sunday, August 16, 2015 approximately 1800 women, ranging in age from 13 to 80, will participate in the 10th Annual Iron Girl Columbia Triathlon. Among those women will be Columbia, Maryland’s very own Defu Fekadu, the first disabled woman triathlete to participate in this race.

A Columbia, Maryland staple and an introductory triathlon for many women in the area, the Iron Girl Columbia Triathlon is an inspiring women’s event on many levels, but getting a glimpse of Defu and her team at this year’s race is sure to be the most inspiring sight to see. Defu will be supported by a team of women from Athletes Serving Athletes, a non-profit organization that empowers athletes living with disabilities to train and compete in mainstream running and triathlon events. Athletes Serving Athletes (ASA) provides the assistance of able-bodied volunteers termed “Wingmen” and Defu will not only be the first disabled woman to participate in this event, but ASA will also provide for the first time, a complete team of women “Wingmen” to support her along the way.

The team consists of swimmer, Aleah Zinalabedini; biker, Melinda Peters and runner, Kerry Blackmer who will all work together with the help of their team leader, Jennifer Roussillon to assist Defu across the Iron Girl finish line. When asked about Defu and the experience so far, the ASA Wingmen each have an empowering and inspiring story of their own to share.

“Defu told me that ASA has given her a voice,” said Melinda Peters, biker wingman. “I think she is brave, not only for competing in this race but for constantly motivating and teaching others that they too can do anything they put their mind to.”

“I’m truly honored that Defu and ASA are giving me the opportunity to swim with her in this year’s Iron Girl,” said Aleah Zinalabedini, swimmer wingman. “I am consistently inspired by her beautiful smile, incredible outlook on life and ability to work through her fears with grace.”

“I’ll never forget the first time I met Defu,” said Kerry Blackmer, runner wingman. “I’m not sure that I realized then the profound impact Athletes Serving Athletes and Defu would have on my life.”

It is easy to get caught up in medals, times, awards and personal records in a race like the Iron Girl Columbia Triathlon. Team Defu stands as a reminder that this race means so much more than that. This race, and anything like it that is a true test of physical strength and mental endurance, is about empowerment and finding the courage to do something that might seem impossible.

“Just like any athlete, Defu, has been training for Iron Girl. She has gone outside of her comfort zone and continues to push forward,” said Jennifer Roussillon, team leader. “Simply put, Defu is the epitome of what it means to be an Iron Girl, and I am honored and humbled to be on this journey with her.”

The 10 Year Anniversary of the Iron Girl Columbia Triathlon will take place on Sunday, August 16, 2015 in and around Centennial Park in Columbia, Maryland. The race will start with the swim portion at approximately 6:50 a.m. and continue through the late morning. For more details on the event and to view results after the event, visit www.ulmanfund.org/ucfraces/ .
About the Ulman Cancer Fund for Young Adults & UCF Races

The Ulman Cancer Fund for Young Adults (ulmanfund.org) is a non-profit, 501(c)(3) organization that changes lives by creating a community of support for young adults and their loved ones impacted by cancer. Founded in 1997, the Ulman Cancer Fund for Young Adults works at both the local and national level to ensure that all young adults impacted by cancer have a voice and the necessary resources to thrive.
UCF Races was established in 2010 to further the mission of the Ulman Cancer Fund for Young Adults. UCF Races produces first class endurance events that enrich the community, celebrate the achievements of every participant and ultimately spread awareness of the young adult cancer fight.

 

About Athletes Serving Athletes

Athletes Serving Athletes (ASA) is a non-profit organization located in Maryland that empowers athletes living with disabilities to train and compete in mainstream running and triathlon events. Most ASA athletes have very limited to no mobility and compete with the assistance of able-bodied volunteers termed “Wingmen” (men and women, young and old, fast and slow). ASA offers innovative athletic training, supportive mentor relationships, and high quality endurance events for athletes living with disabilities – all of which are free of charge to the individuals and families served. To support or learn more about ASA please visit: www.athletesservingathletes.org

You Are A BadA$$!

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#facingtheissues, by Ceili Leahy, an 18-year old Ewing’s Sarcoma with secondary AML survivor

“No cancer is easy, period. The reason I say this is not to freak you out, but because I think some people don’t give themselves enough credit for how incredibly badass they are.”

I’m sure you’ve heard this about a million times from your doctors, your psychologists, your parents, and pretty much anyone else who cares about your sanity, but do not google your cancer. And, more importantly, do not google your prognosis. I’m sure there’s this massive part of you that’s dying to take a peek, just a little browse through the infinite files available to you on the Internet, ranging from papers by the most knowledgeable sources out there to chat room speculations from people who have never even been through a high school biology class. And while there’s a lot of good information out there, it’s not what you need right now.

For those of you who know your prognosis already, whether you were told by your doctor, had a friend slip up and tell you, or (God forbid) you googled it, this part is for you.

Your prognosis was likely given you in the form of a percentage. Whether you’ve got a 99% chance or a 5% chance of kicking this cancer’s ass, you have cancer. So let yourself freak out a little (just a little.) It kills me when kids say, “Oh, I had X cancer, so compared to most cancers it was easy.” No cancer is easy, period. The reason I say this is not to freak you out, but because I think some people don’t give themselves enough credit for how incredibly badass they are.

Back to the numbers. You may have had this explained to you already, but your prognosis is based entirely off of statistics, AKA there’s not necessarily anything you have in common with the rest of the population being used other than that they have your cancer. And a statistic like that can only tell you so much. For example, it doesn’t tell you which of the participants skipped chemo treatments, which ones were treated at under-funded hospitals, which ones only ate Funyuns for a year, or which ones had to travel eight hours to get to their clinic. It tells you nothing about the individual, just the basest information about the group as a whole. The way I see it, even one hundredth of a single percent is infinite for you. Even that miniscule chance represents someone, so why not you?

“If I didn’t have my confidence or my will, what did I have?”

I’ll share a secret with you: I looked at my prognosis. Granted, I did last several months without looking, but I looked nonetheless. I had 15% chance of surviving, and if you would believe it, finding that out made me so damn proud. Because at that point, I’d already overcome some serious junk. I’d made it through weeks of esophageal mucositis, severe dehydration, the entire first stage of chemotherapy, and all 35 body-breaking sessions of radiation. And if I could survive that, I could get through anything. The thing is, I’m not sure I could have made it through all that if I had known what my chances were from day one. I mean, 15% is pretty bad; not the worst, but it’s no cupcake either. I’m not sure I would have been so confident in myself, and in my experience the mere will to survive is greater than any drug or treatment out there. If I didn’t have my confidence or my will, what did I have?

So if you’re reading this and have resisted the urge to check out your odds until now, please, please, please wait. There’s a right time, and a whole lot of wrong time, but when it’s right you’ll know. And whenever that time comes, go ahead. That number will probably be a point of pride for the rest of your life

“Many survival case histories show that stubborn, strong willpower can conquer many obstacles. One case history tells us of a man stranded in the desert for eight days without food or water; he had no survival training, and he did nothing right. But he wanted to survive, and through sheer willpower, he did survive. With training, equipment, and the will to survive, you will find you can overcome any obstacle you may face. You will survive.”

-Survival manual of the US Army

No Instruction Manual For YA Cancer

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#facingtheissues, Meg Fitzgibbions & Jenna Hearndon

Jenna is a 26 year-old caregiver to her 27 year-old active duty husband, Josh, who has grade II gliomatosis cerebri. This term rolls right off of Jenna’s tongue, as she’s been asked countless times about her husband’s diagnosis. In simpler terms, Josh has a cancerous tumor in his brain. Jenna started a blog shortly after Josh’s diagnosis, sharing “I have created this blog mainly to keep everyone updated on what is going on, but also as a therapy for myself. I am in a constant state of needing to express my thoughts and feelings.” Included below is a glimpse into the life Jenna and Josh are adjusting to together and Jenna’s points of view and realizations, as her husband’s caregiver.

“There is no guideline or instruction manual on how you are supposed to deal with this all.”

The therapist explained to me that I am going through the stages of grief. I am grieving the old life I had. I am grieving the life we had planned to have. I am grieving the pregnancy that we were supposed to be experiencing right now. In a matter of an hour she had put my entire life in perspective. I want it to be known that I, in no way shape or form, blame Josh. This disease is something that literally came out of nowhere and knocked us both on our asses. There is no guideline or instruction manual on how you are supposed to deal with this all. Each person grieves in their own way. For me, it’s bottling it all up until I completely crack.

For Josh, it’s humor. He makes light of situations and tries his hardest to be strong for the both of us. I know a lot of people constantly say, “oh you’re handling this so well” or “man, you guys are always so positive” but if they all knew the number of times during the day I break down and cry they would all be surprised. I’m not here for a pity party, I am just here to show that we are in fact human. I am merely indulging you all on a part of my life that I keep very personal. I sat on the fence for a while on reasoning how much is too much to share. I have come to the conclusion that I’ve already shared a lot. Everyone has read our process with freezing the sperm and fertility so that’s enough TMI already. Am I going to share every down moment in my life? No. Am I going to mention every time Josh and I have a fight? No. But I do think it needs to be known that we’re not living this Leave it to Beaver lifestyle. We fight. We argue. We cry. We laugh. We make up. And we go on with our lives.

This has by far been the most trying thing on not only us but our marriage as well. I take every day with great appreciation, for it is one more day that I have with my husband. I fight with him. I yell at him. I regret doing so more often than I used to, but I am only human. I try hard, really hard in fact to make sure his life is as easy as possible. That he doesn’t have to worry about the medications or the appointments. Yes, we spend a lot of time at the movie theater and yes, we have seen pretty much every movie currently out right now. But honestly, please, tell me where else can I take a cancer patient?! He enjoys them. I get a break for a few hours. It’s a win-win. So to all, let me remind you, there is no manual. There are no guidelines. We are literally flying by the seat of our pants and just praying we are doing it right. Do we mess up? Yes. I often worry about that, but we’re making the best out of a crappy situation and I’d say we’re doing pretty good.

If anyone, and I mean ANYONE is feeling depressed, overwhelmed, or just feeling the need to talk it out with someone, please don’t be afraid to ask for help. I wasn’t too proud to ask for it, I just assumed that I was doing okay and that I didn’t need it. Once I started talking, I literally had word vomit and I couldn’t stop. It’s so freeing to finally be able to tell someone something that you have kept bottled up inside. So please, don’t be afraid to ask for help when help is needed! 

As far as me, I am still a work in progress. I am changing around therapists now as I couldn’t stand the one I have. I do believe that sometimes it’s good to shop around for a therapist. You shouldn’t be afraid to do so. For me, it’s all about a comfort level. I have to click with you before I am able to tell you my deepest darkest secrets. I have had two in the past few months, both of which I didn’t click with. One focused too much on my marriage and making issues that weren’t there. And one focused too much on me emasculating my husband (YES, she said that). I am not looking for a miracle worker. I realize that their job is to help me sort through my problems. But the advice they were offering me was unrealistic for a wife taking care of her husband who has cancer. Her big advice was to go Target by myself. Yes, I am going to leave a seizure prone person in a room by himself so I can go get away for an hour?! Uh no. Her other advice was that my life revolves too much around his cancer. UH EXC– USE ME?! You don’t ever tell a mother that her life revolves too much around her child. You don’t ever tell a career woman that her life revolves too much around her career. But because my husband has cancer, and I am his main caregiver, it’s wrong that my life revolves too much around him? He is my life. He is my everything. So no, I don’t work. I don’t go out with friends. I don’t go shopping by myself. I can’t tell you guys the last time I got my hair cut. My nails are trashed and we won’t even go into shaving my legs. Yes, I have let myself go. Before anyone says it, yes I know I have to make time for myself. I have to put my needs in there too and I do. I am merely stating all of this to give everyone an idea. But spend a day in my life where I am constantly caring for another human being and you’ll see why. No, he’s not in a wheel chair and he doesn’t physically depend on me. But I try every day to make sure his days are easy and stress free. So what if my house isn’t clean, if the dishes aren’t done, and if I didn’t make it to Target by myself, well then that’s fine. Because I know my husband is happy, I am happy. And to me that is all that matters!

You can follow Jenna and Josh’s journey here!

Starting & Building Families After Transplant

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#facingtheissues, by Elizabeth Saylor

Many young adults will go through a bone marrow or stem cell transplant in as part of their cancer treatment. BMT/SCTs are intense medical processes that offer lives saving options for young adults but can greatly compromise fertility.

I have been privileged to serve many young adults before and after transplant. One couple, Phil and Jes Koubik are kind enough to share their thoughts on the journey to build their family and to welcome their son Nicholas into the world.

“…I would tell anyone going through cancer and facing many of the same decisions that things may not go exactly as you planned or thought that they would occur…but sometimes that’s when real blessings truly happen and you find out just how amazing life truly is.”

Being a young adult and going through cancer has been one of the most difficult experiences my wife or I have ever had to face. You [are forced to] deal with…fertility issues, from all the treatments including chemotherapy, radiation, and even getting a stem-cell transplant.

Now the doctors told us that I’d most likely be infertile from everything I went through and, while there’s a small chance that my fertility might return, I’ll likely be incapable of having biological children for the rest of my life. So a couple of years ago, I went through testing and found out that I am incapable of having my own biological children. Then towards the beginning of December 2013, my wife and I decided we wanted to explore options for having a child by other means as we did not want to wait hoping that my fertility might come back and then find out that we waited too long that my wife eventually lost her ability to have children. After talking about the various options, my wife and I decided that we would use donor sperm and IVF to fertilize my wife’s eggs. So we officially started our journey towards parenthood Christmas Eve 2013 by having our first appointment with the fertility center Shady Grove.

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We acquired our donor sample and proceeded through one round of IUI which did not work. We had one vial of our donor sample left and thus made the decision to go straight to IVF. Well it turned out to be the right decision as my wife got pregnant on the first try in April 2014. Finally, our dreams of becoming parents was finally coming to fruition. I must admit that since we used donor sperm, I did have some concerns about how I’d feel going through this. However, I must say that the concerns started to disappear fairly quickly and by the last few months of our pregnancy, every single concern I ever had completely disappeared and even felt strange to me as though those concerns were from another person entirely and not myself. This was going to be my son, biologically or not and nothing was going to change that. I’ve learned that family and especially parenthood isn’t just a matter of biological relationship but whether there’s love and the willingness to be there for the child and make every attempt to give them the best life possible. I’ve heard the quote about it taking more than biology to be a parent. It takes someone willing to be there day in and day out striving to give their child the best life possible. Knowing this, it never became more real then the day my son was born which was December 23, 2014. There are no words or expressions which can do accurate justice to the pride, happiness, and elation I felt that day my son was born. That day instantly became my favorite day and experience EVER making the day I married my wife fall into second place.

So while this journey has been a long and arduous one, it has been well worth the wait. While my son Nicholas shares no biological factors or similarities with myself, he is my son nonetheless. There is no one who can take that away from me and now I’m living the dream of being a parent. It may not have been in the way I always thought it’d happen growing up and certainly didn’t plan on cancer entering my life and making changes to how I thought my life would go. However, I wouldn’t change a thing as having gone through everything we’ve been through and struggling to achieve something many take for granted, has made my wife and I so incredibly thankful and appreciative for everything God has given us. We’ve realized the incredible gift that becoming parents to a child truly is and neither of us take our son nor our experiences for granted. So I think my wife and I would tell anyone going through cancer and facing many of the same decisions that things may not go exactly as you planned or thought that they would occur….. But sometimes that’s when real blessings truly happen and you find out just how amazing life truly is. Never give in and never give up!!!

Sincerely, 
Phil